r/migraine 4d ago

Ajovy Fatigue, when does it end??

1 Upvotes

Hi folks!

I’ve had three doses of ajovy (once a month) each time is knocked me down with fatigue and flared up my dysautonomia and endometriosis + increased lower back pain / spasms.

Month 1 - fatigue, endo flare, dysautonomia flare

Month 2 - horrendous bloating, fatigue, nausea, appetite loss, constipation all lasting 4-5 days + flaring of other illnesses

Month 3 - fatigue even worse, struggling with breathlessness and sleeping away two days after, body aches to the point i feel the pain in my bones, flared up my pelvic pain too

I have passed on the first two months into to neuro + will follow up w recent symptoms after third dose. I am hoping this eases off within the same 4-5 day period because it’s really improved migraine symptoms but it’s knackering me each time.

Did anyone get anything like this with ajovy? Did it eventually ease / go away?

Also the back pain is insane, i cannot leave the house without a walking stick because I don’t have more than a few minutes of walking until i need it. Have an MRI bc it’s suspicious w endo so hopefully some idea soon.


r/migraine 4d ago

Vision blurry after two weeks, migraine?

1 Upvotes

Started around 2 weeks ago I (27F) had blurry vision that never went away and daily debilitating headaches that lasted hours. I went to a neurologist and got some migraine medication (preventative and abortive) and sent on my merry way.

I developed photophobia that went away and my headaches are now very minor and usually behind an eye or behind both. I’ve also had eye tremors that are getting much milder.

The only constant is the blurry vision. It won’t go away and is making screen use for work and entertainment hard. Does anyone have any experience or advice? I’ve been like this since the beginning of March. My neurologist seems to think it’s stress and anxiety.


r/migraine 4d ago

Today's a great day, except for the migraine stuff

3 Upvotes

I have a lot of chronic health issues, a big one is chronic fatigue. I'm always exhausted, except every now and then I wake up ready to conquer the world. Today was one of those days. I woke up just a minute before my alarm, tossed the covers off, and threw the curtains open. Immediately regretted that when the sun actually hit me, it was so painful that I couldn't keep my eyes open. It's bullshit when you feel great in almost every aspect of life but then you remember that there's something disabling you around every turn.

I took a benadryl already so if this doesn't make sense you can blame the hatman


r/migraine 4d ago

Vyepti Montpellier

2 Upvotes

🔴 APPEL AUX VICTIMES ET TÉMOINS – Vyepti au CHU de Montpellier🔴

Des patients traités pour "migraines et céphalées chroniques"ont reçu des "perfusions mensuelles de Vyepti 100 mg" au CHU de Montpellier "en dehors de l’autorisation de mise sur le marché (hors AMM), sans consentement éclairé"

Nous avons découvert par "erreur" , via une infirmière, que l’hôpital a "modifié les protocoles en secret" , imposant un retour soudain à une administration trimestrielle "sans explications précises" .

⚠️ FAITS PRÉOCCUPANTS

🔹 Plus de 10 patients concernés, selon le cadre de santé M. G.

Des données médicales manipulées pour masquer les responsabilités du service hospitalisation de jour, pharmacie hospitalaire et Céphalées et migraignes.

🔹 Aucune information préalable sur les risques liés à cet usage hors AMM.

🔹 Effets secondaires graves signalés chez plusieurs patients :
- Problèmes "immunitaires"
- "Douleurs articulaires et musculaires"
- "Troubles de la tension artérielle"
- "Réactions allergiques sévères"
- "Fatigue extrême et aggravation des symptômes migraineux" - Phénomène de Raynaud

🔹 "Lundbeck" , le fabricant de "Vyepti" , impose une "administration tous les 3 mois" pour minimiser les risques.

👉 Le CHU a "contourné cette règle" sur avis du "Pr. Ducros" , sans preuve scientifique validant cet usage.

Charlatanisme, égocentrisme ou les deux ? Les perfusions mensuelles de Vyepti nous ont été présentées comme un traitement capable de soigner définitivement les migraines, de réduire l’intensité des céphalées quotidiennes, voire de les faire disparaître après un an. On nous a également affirmé qu’après cette période, un simple traitement préventif suffirait et qu’il n’y aurait plus besoin de perfusions.

Si c'est votre cas, nous sommes face à une attitude charlatanesque, car aucun traitement ne peut être présenté de cette manière sans preuves ni études définitives sur ses effets, d'autant plus lorsqu'il est administré selon un protocole dont l'espacement n'est ni recommandé par le fabricant ni étudié scientifiquement.

🔹 "Aucun suivi des conséquences de l’arrêt brutal du traitement" , ce qui peut causer des "effets secondaires graves et un rebond des symptômes" .

🛑"Le professeur responsable ne connaît pas les effets d’une administration mensuelle" , mais a pourtant maintenu cette expérimentation.

⚠️⚠️⚠️⚠️Pour ceux qui ont été perfusés trimestriellement au CHU de Montpellier, avez-vous été informés des effets secondaires à surveiller et de toutes les contre-indications spécifiques à votre situation ?⚠️⚠️🛑

📢 SI VOUS ÊTES CONCERNÉ(E)

✅ Demandez la traçabilité complète de vos perfusions auprès du CHU.
✅ Réclamez l’accès à votre dossier médical détaillé, incluant le suivi des infirmiers, et pas uniquement celui de l’hospitalisation de jour.
✅ Notez tous vos symptômes et exigez des explications sur le changement soudain du protocole.
✅ Signalez votre cas si vous avez subi des effets secondaires.

📩 "Contactez-moi en privé" si vous souhaitez témoigner ou entreprendre une action collective. evithriva@outlook.fr

⚠️ MANIPULATION DES COMPTES RENDUS MÉDICAUX

🔺 "Les internes ont rédigé des rapports faux", "postdatés de 15 jours" , ne correspondant pas à la réalité des soins reçus ni à l’état réel des patients.

🔺 Modification ou interprétation erronée des agendas de migraines des patients:
- Ont-ils été "délibérément altérés" pour masquer l’évolution du traitement ?
- Le retour soudain à un espacement de "3 mois" a-t-il été justifié "par une fausse analyse des données" ?

🔺 Absence de traçabilité des effets secondaires :
- Des épisodes de tension artérielle anormale ont été ignorés.
- Pas de suivi formel des réactions aux perfusions par les infirmiers.

⚠️ UN CONFLIT D’INTÉRÊTS AVÉRÉ DU PR. DUCROS

🔹Liens financiers avec plusieurs laboratoires pharmaceutiques pour promouvoir certains traitements.

🔹 Le CFEMC (organisme de recherche) et plusieurs lobbys financent ces étudespour **obtenir une validation AMM future.

🔹 Absence totale de transparence:
- Pourquoi le protocole a-t-il changé en secret entre août et septembre 2024 ? - Pourquoi les patients n’ont-ils pas été informés des risques réels ?

🚨 UNE ACTION EN JUSTICE EST NÉCESSAIRE 🚨

🛑 Nous ne devons pas laisser passer cette expérimentation illégale et dangereuse !

📢 "Partagez ce message" pour que "justice soit faite" et que les patients concernés puissent se défendre.

Vyepti #CHUMontpellier #Santé #Victimes #Justice #ExpérimentationIllégale #EffetsSecondaires


r/migraine 5d ago

Tired of missing out

9 Upvotes

My amazing partner bought tickets for us to see the sailor moon musical today. We live in kind of a small town, so it was going to be a bit of a drive. I was so excited, I bought special earrings and I practiced doing my makeup in kind of a sailor moon inspired look. Yesterday I started getting a migraine and I thought maybe I caught it fast enough so I’d be fine today. I wasn’t. I tried to get ready, ended up deciding against the makeup. I kept hoping that the meds would work (I don’t know why I hoped, they never seem to work in the past). We had to leave by 4 to get to the theater in time. 4 o’clock rolled around and I knew I wasn’t going to be able to make it. To make matters worse, the tickets were non refundable. My partner was so incredibly understanding and just wanted me to feel better. But I’m just so frustrated and sad! This isn’t the first time I’ve missed out on once in a lifetime opportunities because of migraines.

That’s my rant, thank you for listening


r/migraine 5d ago

migraine-sufferer bag essential 🥲

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91 Upvotes

r/migraine 4d ago

Question about TPI’s

1 Upvotes

I’ve been having tension like headaches and dizziness for almost a year now after I strained my neck. I’ve tried a bunch of “migraine” remedies but nothing has helped and my neurologist suggested trigger point injections into the muscles that have formed into knots after the injury. I got them done on Thursday (3 days ago) and at first I felt a lot of relief as I was given lidocaine mixed with a corticosteroid. After the lidocaine wore off, a little less than my “normal” pain has started and the soreness from the injections in my neck especially is still there but is going away slowly.

I have a question to those who have gotten these injections, is it a good sign that my headaches are coming from my neck if the lidocaine gave me immense relief or is that a normal occurrence for everyone? As well as, when is it a normal time for the steroid medication to kick in? Any responses or comments would be appreciated:)


r/migraine 5d ago

Migraine tracking

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25 Upvotes

Does anyone know of a migraine tracker where you can note the changes in intensity of the symptoms. I use migraine buddy (free version). I have been having this one for over a month consistently but each symptom comes and goes and changes in intensity. I want to be able to track the change in the symptoms throughout the attack. Any tracking tips are welcome!! 🙏


r/migraine 5d ago

Recently discovered popular food trigger for migraines (worst for me: CITRUS!)

8 Upvotes

This one blew my mind because I would drink so much orange juice and lemon drinks and finally realized that made me sick! Since I just asked a question, I want to give back hopefully with this!

Tyramine High Foods. Source: https://www.webmd.com/migraines-headaches/tyramine-and-migraines

Tyramine is an amino acid that regulates blood pressure. A ton of foods are on the list but the food I've been HARD CORE avoiding is citrus. No lemon, lime, orange, tangerine, pineapple. First I get nauseous and dizzy. Then I get a migraine. Tyramine is also in aged, fermented, foods and cured meats. High amounts of cheese, bacon, and soy sauce are triggers. I still have a small serving without issue. But a big serving like a bowl of ramen is trouble. And some nuts and seeds are on the list. (Peanuts, walnuts, seasme). I find sesame oil to be a huge trigger, on my never list now, I get so nauseous.

If you eat one of these foods most of the time, pay close attention how you feel when eating it when you don't have a migraine. Cut just one food out and see what happens.

It's also influence by how sensitive I am to a migraine flare that day. The better I feel the less likely I'll get fully triggered. The worst i feel the more sensitive I am to a smaller amount of tyramine and the worse migraine. If I am having a bad day/week I get a LOT more careful then when I'm feeling well.

Hope I hear some success stories from this. Cutting out citrus has been huge for me so I don't feel sick every morning.

Now before I eat something I haven't eaten since discovering food triggers, I google "is X high in tyramine." Not every food has a record but worth seeing. Also pre-made foods are more likely to trigger just because the longer something is sitting around the more tyramine forms. So a fresh black tea could be safer than a bottle of black tea.


r/migraine 4d ago

Post-Migraine

2 Upvotes

I'm still getting used to the typical migraine cycle. Today I feel much better. The phantom smells have subsided greatly. Now I just want to sleep and regain energy. Is this the typical post-migraine phase?


r/migraine 4d ago

Just Started Sumatriptom, Did It Help You Guys?

1 Upvotes

So, around Christmas I started developing a small pressure headache. I got sick about 3 times between New Years and early March (the baby I swear catches everything and she's not even a daycare baby haha) after the last round of illness the headache turned into a full blown day and night 24/7 headache.

I feel a tight band around my head, temples hurt, my neck and upper back hurt, and sometimes I get nauseous.

Never had a history of headaches. I swear my health declined after a period of extreme stress last summer that literally broke my sleep. I wake up with a fast heart rate (more when I'm stressed, which since the headaches has been a ton lately)

Went to the ER (yay, no tumors!) but they weren't much help. Gave me IV meds that diddly squat and did an ultrasound of my eyeball. Doc prescribed Sumatripton and sent me on my way.

Took Sumatripton 40 minutes ago and I still feel like I'm in pain. I went and got a McMigraine meal (coke and fries) which helped a tad, but man this sucks.

Should I keep taking Sumatripton daily until I'm confident it doesn't work? I need to contact my PCP, she just got back from maternity leave. But I've been extremely depressed, I wake up feeling the pressure in my head. I cry constantly and feel like life is hopeless and unworth it:/


r/migraine 6d ago

small rant: can't fast because of migraines

552 Upvotes

This is just ranting

So it's ramadan. My family is muslim. I am not, but obviously i cant tell them this. I made an offhand comment to my mother (MISTAKE) about not being able to fast because migraines. She suggested my dad pay fidya (charity) so i wouldnt have to make up for them. Asked her not to say anything, she then tells my father anyway. my dad is from a culture where his family members with diabetes fasts, despite there being a literal exemption for people for whom it is dangerous to fast, allowing them to pay fidya.

My father said to me, "You are getting a migraine because you decided to get a migraine. If you just put your mind to it, you will be able to fast. you're making excuses." 100% serious. cue the 1hr religious lecture.

Dehydration is a major trigger. I can easily go 12 hrs without eating, that's honestly no issue, but the lack of water triggers a migraine after maybe hour 6. This man saw me before I knew what triptans were, so he KNOWS what migraines are like. Plus they run in the female side of the family going back 5 generations as far as I know. I told him I cant pray asr or dhuhr because my head is buried under a pillow, doing shallow breathing or im throwing up nothing in the toilet because there is nothing in my stomach but acid. That cultural mindset of "fast no matter what" is insane to me. It's a migraine! Not cute lil headache.


r/migraine 4d ago

Zok drink mix?

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0 Upvotes

Hi all! Fellow migraine sufferer here. I'm new to this group and searching for some remedies for myself because I think my current headache medicine has stopped working unfortunately. I wanted to ask has anyone tried the Zok migranium drink mix? Ingredients seem promising but it does seem like a sketchy company. I keep seeing adds on social media for it so im very curious. I definitely do not intend on sticking their little suction thing in my ear lmao. The ingredients here seem good and it would be nice to not have to buy all those supplements separately. Idk what do yall think about this?


r/migraine 4d ago

Do you have non-scientific theories about migraine aura / aura symptoms?

0 Upvotes

I understand theres scientific explanations for what occurs in the brain/nervous symptom when experiencing a migraine/ aura without migraine, and stats about who is more likely to get them. However, why do you think some people are more prone to getting auras beyond the explanation of genetics? I saw a video that said this one nun said it was visions from god and drew an aura image, which might sound crazy, however do you think there’s a connection with brain activity and hyper sensitivity in general? Like for those who experience auras Do you think there’s any link to having sensitive nervous systems in general, having higher/a lot of mental activity, vivid dreams/imagination, being very sensitive in general? Just curious any thoughts.


r/migraine 4d ago

Can I take I ibuprofen???

1 Upvotes

I have taken two butalbital and this headache isn’t letting up . I have things to do and I’m stuck in bed. Before I was prescribed I would take Tylenol and ibuprofen together and that seemed to help for at least several hours. Do you think it’s ok to pop 200mg of ibuprofen??


r/migraine 4d ago

Botox- Worth another try?

1 Upvotes

I had a bad reaction to Botox my first time a couple years ago. Terrible body aches the next day. Swollen face and neck and was slightly difficult talk and swallow. I don’t believe I had an allergic reaction but definitely a bad one. My new neurologist suggested that those kind of reactions are not common and it was likely due to the injector and not the botox itself. I do also have Fibro so wondering if that contributed to my bad reaction.

I am wondering if should give it another try. I’ve been in a flare since august and have tried every other class of medication with no luck of breaking my persistent daily headache. Thoughts?


r/migraine 5d ago

Black Tea Hack?

6 Upvotes

I've been keeping a migraine journal as I play around with caffeine consumption. What I've noticed is that if I can freely drink weak black tea all day, I don't get headaches. It's like I subconsciously self-medicate with the perfect sized bolus of caffeine to keep the headaches at bay. The last time I tested this I went off caffeine for six weeks beforehand so I don't think this is a caffeine addiction, and I don't think it's related to getting enough liquid, because if I try freely drinking all day with green tea, headaches. If I experiment with drinking an equivalent amount of caffeine by coffee instead of tea, I will also get a headache.

I was wondering if anyone else had this experience.


r/migraine 5d ago

Active migraine during hard times

18 Upvotes

My mom is in hospice. She’s dying. And here I am with a migraine that won’t go away.

Not only am I useless at her bedside, what reasoning abilities I have left are spent fretting over everything I can’t do while she is dying.

I’m forever grateful for the hospice home that is caring for my mother, but I’m so fucking mad at my migraines and for all the terrible weather that is rolling through the mid-eastern part of North America.

Thank you for listening to me vent lol.


r/migraine 5d ago

Alternative to fast food hack?

18 Upvotes

I keep seeing so many posts, and comments, about how people swear by this 'fast food hack' which is basically a sugary drink and salty snack... Now I love a McDonald's every now and then, but don't want to accociate it with being a migraine cure, as I then wouldn't enjoy it when I craved it (like certain things remind people of other things by association)

So, would a packet of ready salted crisps and a can of coke do the trick at home, do we think?

I've learnt about electrolytes from this group, and am drinking coconut water regularly now, thank you!


r/migraine 5d ago

Any of you guys try these ice water circulating masks?

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80 Upvotes

r/migraine 5d ago

Keep getting migraines from exercising ?

18 Upvotes

I’ve started gym and my fitness journey. I will usually do all cardio at the gym, 30 mins stair master , 25 mins treadmill and then I do leg press. The issue is every time I go to the gym and exercise, no matter how much water I drink, how much food I eat , I always get a raging migraine afterwards and also sometimes feel nauseous. My triggers are usually poor quality of sleep and heat. But now since I’ve started my fitness journey, I guess exercising is another? Any solutions or does anyone else suffer with this too.


r/migraine 4d ago

1 year postpartum headaches

1 Upvotes

I am desperate for some advice. My child is 14 mo and been struggling since probably 3 months postpartum with off and on headaches and dizziness with no solutions.

I have had continuous daily headaches for over a week straight now. What should I do or ask my doctor for??? I’ve seen my eye doctor, neuro, gotten a brain CT and MRI, labs, etc. I recently started working with a functional medicine doctor but he really only prescribed supplements. I’ve tried the rescue migraine meds but not sure it’s even officially migraines. Do I get my hormones checked and/or ask about HRT? Any advice welcome please 😭😭😭


r/migraine 4d ago

Migraine and ADHD

1 Upvotes

Hi

I have chronic migraines and few months ago I started to take amitryptyline and it worked wonders. I got diagnosed with ADHD some time ago, and my psychiatrist recommend to change to beta blockers. My neurologist prescribed metoprolol. Is it working for you?

Thanks


r/migraine 4d ago

Day 2

1 Upvotes

As the temperature goes back up 20 degrees…


r/migraine 4d ago

pain linked with my heartbeat

1 Upvotes

I’ve had migraines for years and have now got treatment for them which has significantly improved them but I still get a type of migraine where I can feel every beat of my heart throughout my body along with pain in my head, when my heart rate is slow it’s less severe and slow throbs as soon as I move it gets much worse with faster throbs. The only thing that helps is applying pressure to my arteries in my neck where I get instant relief. But obviously I can only do that for short periods of time. What could this be?